"Suffering the Slings and Arrows of Outrageous Fortune"

Once again, we are in the process of trying to figure strange stuff out. And it is confusing, with everything Emily has been dealing with over the last few months. At this point, I am starting to wonder if there are some threads that tie some of the odder symptoms together. This post is going to contain details of the episodes she is having so I have a record here of them and a fair bit of speculation, trying to tie those threads together. I am waiting for the doctor to call back today. Hopefully we find someone to help us figure this out and soon.

Pertinent Back Story:

  • Blood work has shown some signs of MS 
  • Blood work has shown signs of sarcadosis. Lung x ray was clear but neurosarcadosis could be a possibility
  • Concussion (sandwiched between several  minor(?) head injuries) and Post Concussion Syndrome
  • Her neck has been pretty unstable – to the point of needing to wear her hard collar at times.
  • She has had ongoing issues with her throat [feeling as if it is] collapsing. She gags/coughs, strains, and stretches until she can breathe and swallow. It had settled down but is becoming a problem again.
  • CSF pressure is bouncing between high and low. If there was a leak, it seems to be better now and she is back to taking a small dose of Diamox three times a day. However, last night she felt like she had low pressure so who knows – it is all a guessing game at this point. None of the doctors seem particularly interested in pursuing this and we have bigger problems now, at any rate.

Last week, Emily started having “episodes”, for lack of a better word.

Tuesday 2-9

The first happened in the car on the way home from speech therapy last Tuesday. Her neck had been unstable since they messed with it on Friday at the Concussion Clinic and she was wearing her hard collar. Part way home, she commented that her vision went wonky and fell asleep – or so I thought. Turns out she was just sort of out of it – couldn’t speak and she appeared to be asleep but she was aware. When we got home, I had a hard time waking her up and when I did, she couldn’t move her arms and legs and couldn’t really speak. I got her out of the car, she was able to walk a little – she leaned heavily on me and I had to lift her legs up to step up into the house. Once I got her sat down, she started doing better. After a few minutes, I helped her to the bathroom and then to her room. She was still a bit out of it but then she cracked her neck and was fine.

I assumed this was all her neck because she said her neck was in a weird position in the car. It bears pointing out that she has said from the beginning that it wasn’t her neck that it was her brain, but we will get to that in a minute.

Wednesday 2-10

She had another episode the next day, this time laying down on her side. She was talking to me and said her vision got weird again and she felt groggy. Then she couldn’t move her arms and legs or talk for about a minute. I carefully moved her arms (she tends to lay with one arm or the other over her head) and she got better after a minute or so. Her pulse was 110 and her BP was 105/59 during the episode. Pulse was a bit high and BP was a bit low but neither was concerning.

Thursday 2-11

The doctor ordered an X ray of her neck, which we did on Thursday. (Still waiting on those results, but I would be shocked if it actually shows anything useful.) She said she thought she might have had an episode in her sleep and all day Thursday she had times where she felt groggy and felt an episode coming on but it wasn’t until late afternoon that she had a full episode. Again, she was laying on her side and the groggy feeling started, her vision dimmed and she couldn’t move her arms or legs. She could whisper one word responses to questions. I moved her arm and her leg and she got feeling back – first in her fingers, then her hand, then her arms, then her legs. She said she could breath during the episode but not deeply because her chest muscles were paralyzed like everything else.

Friday 2-12

She was sitting up writing in her journal and she suddenly complained that her vision got weird. She had been tracing over a word that she had written earlier. She though she was doing it carefully but her writing was shaky and all over the place. She felt an episode coming on and tried to hold it off. She laid down to rest and watch a TV show and suddenly she stopped talking and moving. She sort of hummed to get my attention. I moved her arm and rubbed her hand until she could move and talk. It appeared to me that her breathing was normal during the episode – a bit shallow and rapid but fine.

Saturday 2-13

I checked on her and found her groggy, mumbling. She rolled over and then couldn’t move. Again, she could give one word answers in a whisper. I moved her pillow because her neck was at a weird angle and, after a minute, she could move again. She started having trouble breathing and swallowing (looked very much like earlier episodes where her throat ‘collapsed’) so I helped her sit up. She asked for a warm wet washcloth to wrap around her throat and it helped. My husband witnessed this episode – he was puzzled but said it sort of looked like a seizure of some kind. I was still on the idea that it was related to the position of her neck but he got me thinking.

Sunday 2-14

She had three episodes in the space of an hour. For these three she wasn’t laying down – just reclining back on her pillows or sitting up on the edge of the bed. Twice we were talking and all of the sudden she got quiet and stopped moving. The third time I had left her alone for a couple minutes and found her unable to move when I came back.

She just stares forward and tries to answer my questions when this happens but can’t do more than whisper one word or just grunt or make some noise. I swiped my fingernail up both of her bare feet to see if she would react. She didn’t. I did it harder and she winced but her foot didn’t twitch. I pinched the pads of her fingers and pushed my thumb nail into her nail beds – no reaction. After about a minute (one episode last almost 2 minutes), she was able to gradually move again and started gasping for breath. I got a warm washcloth again and her throat relaxed so she could breath and swallow.


It was at this point I seriously started reconsidering that it is her neck. I started doing some computer searches and found a description of atonic seizures. It isn’t a perfect fit but it makes some sense. If she is laying down, which is doing a lot of these days, she wouldn’t drop so it wouldn’t be as obvious as it is in many cases.

These episodes last about a minute (other than that first one in the car, which was more like 15 minutes) and she is conscious and remembers everything. She seems to have some warning that it is coming on – a feeling of grogginess and then her vision dims. She cannot move or speak normally for a minute. If she was standing up, I suspect she would just drop – which is a terrifying thought in light of her recent concussion. On that subject, I am wondering if the time she fell forward off her bed and hit her head wasn’t because she was just dizzy but rather one of these episodes. And, having read up on seizures, I am wondering if some of her muscle twitches and tremors might be a type of seizure as well. Anyway, as soon as the episode is over, she is fine – able to talk normally and laugh and such.

The breathing trouble afterwards may just be incidental. From what I can see, during the episodes it looks like she is temporarily paralyzed. Like her brain isn’t communicating with her muscles. When communication is restored, her throat seems to spasm. Once that spasm is calmed, she is totally back to normal. Her head hurts afterwards and she continues to have neck pain but I am thinking that may be a result of her muscles relaxing so much – she has to put her shoulders back in after each episode.

Maybe it is her neck but I am doubtful at this point. I now think my moving her arms or legs had nothing whatsoever with the episodes ending – they likely will end after a moment regardless of what I do. I guess the other possibility is that she is having TIAs, although she doesn’t neatly fit in that box either. The elevated ACE test indicated sarcadosis – seizures and some of her symptoms can be a part of neurosarcadosis, so that needs to be considered. And the possibility of MS has to be on the table as well. I am going to try to get some video of these episodes so we have a record of them – maybe that will help us get this figured out.

So now we are at a point of who can help us figure this out? She has an appointment with the neurologist at OSU but that is a month away. We are beyond our local neurologist but if they can set us on the right track and maybe do some testing it would help guide me in seeking help at Cincinnati Children’s or at OSU. I don’t need to be right – I just need someone to help us figure out what is wrong and fix it.






Comments on: "Another mystery to solve…" (8)

  1. Cheryl said:

    My daughter also has CCI, pseudotumor , eds and some weird bloodwork. Think u should go visit dr Petra Klinge at RI hospital and schedule something w dr Henderson or rekate as well. Hugs n best wishes on this journey. Cheryl Myers

    • Thanks for commenting! I wish these neurological symptoms weren’t so common for EDSers but it sure seems like a lot of people know exactly what we are going through!

      For us, right now, traveling that far is just not possible. Fortunately, Cincinnati Children’s has a pretty solid base of EDS knowledge so I am satisfied with the care they offer for now. I have no idea how familiar the OSU neurologist is with EDS but everything I have heard about him tells me he is a superb doc who can help us. If CCI has triggered these episodes, and that is my working theory right now, we will have to cross that bridge when we get to it. My goal all along has been to avoid a fusion and for 5 years we have been successful. If it becomes absolutely necessary, so be it but we will turn over every stone before we agree to it. There is just so much they don’t know.

      I am so sorry your daughter is struggling with all of this – my heart goes out to you both. It is comforting, though, to know that others really do understand because they are living it too! Thanks for sharing your thoughts!


  2. Has she had an EEG done? I’m not a doctor, but I’m thinking she definitely needs checking for seizure activity. An EEG would show what’s going on in her brain during the episodes.

    A month is too far away. I’d be contacting your local doctor and letting them know about the seriousness of these episodes, and asking for them to speed up your appointment with the other neurologist (a phone call from another doctor is likely to get you in quicker than you just ringing up and asking for an earlier appointment).

    xx S.

    • I called her local neurologist because, even though he has said she is beyond him, he is the one who is most familiar with her and who could get something done the quickest. So, we are scheduling an EEG – I should know in the next couple hours when that will be. Hopefully in the next day or two. In the meantime, we are keeping notes and recording some of the episodes to show the doctor so he has as much info as possible.

      We are balancing 3 different hospitals right now – generally we had done anything specialized at Cincinnati Children’s but we haven’t had the greatest experiences with neurology down there so I would rather get all our neuro stuff done through OSU now if we can. So, it was a toss up as to who to call but I think I made the right decision. We can start testing locally and then decide who she needs to see depending on what it shows.

      Thanks so much for commenting – I appreciate others chiming in and sharing their thoughts. Sometimes I think I am crazy and worry that the doctors do too! But, we have to figure out what is going on and as long as they can’t do it on their own, I am going to put forward theories that make sense. (But it helps to know they make sense to others too! )


      • I have Dysautonomia, and have since I was 14. But it took six years of my Mum refusing to give up for us to get a diagnosis. I presented with seizure-like episodes, which confused the picture, because it made all the doctors think epilepsy – but none of the medications for that worked on me.

        We know now the seizures were from a lack of oxygen to the brain, caused by the Dysautonomia. But the experience means I’m quite familiar with seizures and the testing process.

        Sending big hugs!
        You’re doing a great job, MamaBear ❤

  3. Christy said:

    It sounds like seizures to me. I use to have 4 different types of seizures and they effected me differently with each type of seizure. If her muscles are contracting really tight when it happens it could make it difficult breathing during the seizure. I would take her to a neurologist and ask for an EEG to be done and it would be better if the did a 24-48 hour EEG. I went through brain surgery in 96 and it stopped my seizures but it was before I knew I had EDS. The surgery was spider to take about six hours but it took nine due to an abnormality at the base of my brain they had to repair. The surgeon didn’t know what caused it because we didn’t know I had EDS but now it makes sense….it was probably a case of Arnold-Chiari malformation. I’m so sorry your daughter is going through all this at such a young age. I get overwhelmed an I’m 42 so I can only imagine how she must feel at times. I have a Facebook page if you would like to send a request I’ll accept it or if you have questions you can direct message me.

    Christy Hallford

    • Thanks for commenting – I was hoping I would get some responses from folks who know more about seizures than I do, so I appreciate your insight! We are waiting to hear back about when her EEG will be – hopefully in the next day or two. I agree that the longer EEG would be best but we will have to see what the neurologist is willing to do. We will be seeing the other neurologist in March but hopefully we can get some stuff figured out while we are waiting and he can help us figure it out once he sees her.

      During the episodes, she is limp and cannot move. So there are no muscle contractions, except maybe afterwards when her throat spasms. She says that her breathing becomes automatic and she has no control over it during the episode. After a minute or two, she starts moving her fingers and then can move and speak again. So it doesn’t fit perfectly with any one kind of seizure, I think, but clearly something is going on.

      Your point about surgery stopping your seizures is interesting – I had already started wondering if the first episode really was her neck and whatever happened triggered seizures. And some of the comments I am getting make me think I might be right.

      Thank you so much – it helps both Emily and me to know that there are others who know what she is going through!


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